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Family Members Providing Home-Based Palliative Care to Older Adults: The Enactment of Multiple Roles*

  • Sarah J. Clemmer (a1), Catherine Ward-Griffin (a2) and Dorothy Forbes (a3)

Abstract

Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary analysis explores the enactment of multiple roles for family members providing home-based palliative care to seniors with advanced cancer. Family members had multiple expectations to provide care but felt their expectations of services were unmet. The process of enacting multiple roles was depicted by three interrelated themes: balancing, re-prioritizing, and evolving. Positive and negative health responses resulted from attempts to minimize personal health while simultaneously maintaining health. “True” family-centred care was found to be lacking, but should be a goal of health professionals involved in end-of-life care.

L'espérance de vie des Canadiens s'accroît et, de ce fait, les maladies chroniques (Santé Canada, 2002) exigeant des soins en fin de vie (Fisher, Ross, & MacLean, 2000). La recherche est limitée sur le processus visant à établir la multiplicité des rôles pour les membres de la famille dispensant des soins palliatifs à domicile. En se fondant sur une étude ethnographique plus vaste des relations client-famille-fournisseur de soins palliatifs à domicile (Ward-Griffin & McWilliam, 2004), la présente analyse secondaire visait à évaluer l'adoption de multiples rôles par les membres de la famille dispensant des soins palliatifs à domicile aux aînés souffrant de cancer avancé. Les membres de la famille étaient d'avis que les attentes envers eux étaient nombreuses lors de la dispensation des soins, mais qu'on ne répondait pas à leurs attentes en matière de services. Jouer des rôles multiples était décrit par trois thèmes interreliés: équilibre des charges, établissement de nouvelles priorités, et évolution. Les réponses positives et négatives en matière de santé découlaient des tentatives de minimiser la santé personnelle tout en maintenant simultanément la santé. Les «véritables» soins de santé dans une perspective familiale étaient absents, mais devraient devenir l'un des objectifs des professionnels de la santé dispensant des soins de santé en fin de vie.

Copyright

Corresponding author

Requests for offprints should be sent to:/Les demandes de tirés-à-part doivent être adressées à: Sarah J. Clemmer, 1197 Bethel Road, R.R. #1, New Dundee, ON N0B 2E0, (sjclemmer@gmail.com)

Footnotes

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*

This study was funded by the Social Sciences and Humanities Research Council of Canada (Canada Graduate Scholarship Master's Scholarship – Award Number 766-2005-0823). Sarah Clemmer completed the following work under the supervision of Catherine Ward-Griffin and Dorothy Forbes in partial fulfilment of the requirements for the degree of Master of Science in Nursing.

Footnotes

References

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Keywords

Family Members Providing Home-Based Palliative Care to Older Adults: The Enactment of Multiple Roles*

  • Sarah J. Clemmer (a1), Catherine Ward-Griffin (a2) and Dorothy Forbes (a3)

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